Loving Lucas - The Journey of Our Little Man with Down Syndrome

---------------------------------------------updates below---------------------------------------------------  Hello family and friends, Surgery day is here. I woke up at 4:15am and got to the hospital at 6am to check Lucas in. We got taken back to get vitals and talk with the Surgeons, nurses and anesthesiologist and they took Lucas back to begin his pre-operation stuff. My friend Louise is with me, we left the hospital around 7:30am.  They said it would take about 1hr-1.5hrs until he would actually be in surgery. They gave me a cell phone to get updates on, but clarified that it may mostly be that the surgery has started and that it is finished. No news is good news. We just heard that the surgery started at 9:16am! The surgery will take 4 hours at the minimum. They will test the repair once complete and if they see anything that needs additional attention, they could go back in and it could take another 2 hours. I'll post updates on here if you get curious and I'll send out...

 Hello Everyone, Well, we made it. Here we are. I was at Children's hospital all day yesterday with Lucas doing all the pre-op appointments that get us ready for his surgery. I met with the surgeon, the nurse that talked in detail about the prep we have to do at home & what arrival and recover will look like, Lucas also got his blood drawn, got an xray and also go an echo cardiogram done. We were there from 8am-2pm. He got a commemorative heart pillow that all heart surgery patients get. Result is if it didn't feel real already, it feels real now. I feel like I left the hospital that and walked into a fog of thoughts and feelings trying to process that this is actually happening. Each day keeps slipping by and inching us closer to the "big day". It's definitely weird to want something to happen, but be afraid to have it happen at the same time. I can say that I have been preparing for this spiritually and have been practicing surrender and am committed to havi...

 Hello Everyone, It's about time I updated you. We've had some excitement. It's been a while since I sent an e-mail. As you can see, we've had a some excitement. I've been trying to keep this blog updated even for my own records. I have a visual to get you up to speed. Lucas has just been struggling since the middle of April. We've pushed back his surgery date 3 times. As of today he has been admitted to the hospital 8 times. So the girls are done with the school year as of 6/13 and this last week we were doing well quarantining and staying at home. HOWEVER, Lucas had a cardiology appointment on Wednesday 6/18 and the next day he woke up with a mild fever. NEW VIRUS -  Human metapneumovirus (HMPV)  6/19-Current So this new virus gave him a fever a couple times, but the biggest symptoms have been a super flemy cough, he has post nasal drip and stuffed up. All of this combined with his sleep apnea begins to take a toll over time with his breathing. I took Lucas in...

Hello Family and Friends, I'm just done. Are you done hearing about Lucas going into the hospital again? Man, I feel like a broken record! :) I say this with some sass. Of course, I love the little guy, but the hospital visits have become very tedious. I haven't shared every visit, so as not to bug people and also because some of the visits have been short and manageable. Here's what our life has looked like since the beginning of April: Long story, short, Lucas' surgery date has been pushed back for the 3rd time so it is now 7/16/25. And yes, you are reading the calendar above correctly, I am currently in the hospital as I write this. The latest trips to the hospital have been him fighting off 2 viruses Para-fluenza and our good friend Rhino virus. We were at Children's Wednesday-Friday last week for a couple nights while he fought off a gnarly fever and came back in again Sunday night and are hopefully going home tomorrow (6/3, Isabelle's 8th birthday) because...

Update: 5/14/25 (Day 5) - They took Lucas off high flow last night and he looks good this morning. They also took his blood and his kidney function looks good. So we get to go home! They want to check his blood again on Friday to be absolutely sure that his kidneys are still functioning well, but we can do that out of the hospital. Thank goodness! Update: 5/13/25 (Day 4) - There is nothing concerning on the echo, it looks really similar to the last one he had in March. So the plan is to continue to wean Lucas off the high flow support he's getting now (which is minimal). He will be weaned off completely by tomorrow morning. The other piece is to see how much diuretics he needs to be comfortable until his surgery. They have him on Lasix twice a day and have started hydrochlorothiazide to see if that gives him the last boost he needs. If he continues to look good and his blood work comes back good going into Thursday when we can talk about going home. Looks like we're seeing the ...

Hey All, It's me again. Lucas was doing well recovering at home from his cold and here we are again. 3 It's Friday 5/2 and I brought him into the ER around 8:30pm because he had been breathing pretty hard, fast and with retractions since 7:30pm. Nothing has been out of the ordinary at home so,  not sure at this point what is going on. They suctioned him,  took a chest xray and got a swab to treat for influenza b and covid. They tried giving him albuterol and when that didn't seem to help they started him on hiflow. His breathing has calmed down a bit but not completely.  Now that he is on hiflow he'll definitely be admitted. It's about 2am on 5/3/25 as I write this (still in the ER) and they got the chest xray back and he has edema in his lungs. The nurse practitioner who has been consulting with the team for updates told me that she's not concerned with with amount of fluid,  it's not pneumonia, but looks patchy and likely from a new virus he ma...